Notable and Quotable Seven

Upon picking Rooster up from camp today...
he grabbed me, turned to his love interest (she's six), and proclaimed, "See, I told you she's not in jail!"

Upon returning from my arduous jog, and collapsing in a heap...
Peaches climbed onto my body, put her hand on my stomach, wrinkled her nose, and screeched, "BIG TUMMY!"

Upon telling my husband that he should go ahead and spend money on something even though I might disagree because, after all, "You make money, you should be able to use it how you want to, because it's yours..."
he looked at me with utter sincerity and said, "It's not mine! Everything is ours, because we have a shared destiny, because we're a family." (Don't roll your eyes! It so was NOT cheesy! It wasn't!)

Peaches asked me if I could give her, "pink tails." Ever since her hair grew long enough, I've tried to get her to let me put it up, and if she's going to let me, I'm going to let her believe that the style is named after her FAVORITE color, and not after farm animals that wallow in mud.

Rooster asked me if tomorrow, when his cousin turns one year old, he could give her a special present. What? Daddy's wedding ring. I suggested maybe a stuffed animal or a cute onesie, but he was pretty determined, and tried his best to rip the ring of J's finger.

Driving home, I see Rooster in the rear view mirror clearly giving me the finger. Since this is a first, and totally unmotivated, I asked, "Why are you doing that, son?" He added a little extra thrust of the offending digit in my direction and said, "Because it's BAD!!!"

My family... notable, quotable, quirky, and loved.

Before And After

A few months into Applied Behavioral Analysis, it's time to reflect on what we've learned from having in-home therapists 10 hours a week, besides humility, and how to hide the dirty laundry.

Before ABA, the rooster still needed diapers, though he could only fit his 50 pound body into Goodnights, and could be coerced into using a toilet once or twice a day, maybe.

Now, he looks cute in his cammo underpants, and has accidents three or four times a week, maybe, usually as he's running in vain to make it to the potty on time.

Before ABA, any time you said "no" to the roo, he would lose his mind. And this means any time, including when he asked, "Can I sit on your lap while you drive the car? Can I drive it myself? I NEED TO DRIVE!"

Now, you can say no to roo, as long as you don't bark it at him in an angry voice (who, me?), and after you gently deliver the refusal, he will often say, "Awwwww. Okay, mom," in a "shhheeeesssh, what am I gonna do with you?" tone, and then comply, move on to the next thing, play. And this means sometimes he accepts no for an answer even when his question is, "Can I have a turn now?" (Thanks, ABA, for his ability to ask that question.)

Before ABA, our rooster considered everything in his home his personal jungle gym, and he made no exception for the bodies of visitors.

Now, he still stands on my couch, but he takes his shoes off first, and for everyone NOT blood related, he has started observing "personal space rules."

Before ABA, the word Rooster used with greatest frequency was "AAAAAaaah."

Now, the words he uses most are, "May I..." Kid has a LONG daily wish list, but I'm just thrilled he's ASKING (to wear my jewelry, eat my dinner as well as his own, watch Star Wars, buy a new toy, make out a fort out of my pillows, knock down the tower I just built, use my cell phone... it's a good thing he has adjusted better to the word "no")! I would say ABA has done more for his speech and language development than three speech therapists combined.

Before ABA, attending a party with Roo meant having a battle plan, including an intricate exit strategy, and doing lots of apologizing. Lots.

Last weekend, J took the Roo to a birthday party while I took Peaches out for lunch. J had the easier time, and he had fun. "I pretty much just let him play, and I mostly talked to other parents," he told me, while I gaped, feeling kind of jealous and awestruck. This was a major first, and I know the deities have horrible plans for us next weekend when attend my niece's first birthday for telling you this, but, Wow. When he told me this, I knew it was time to give mad props to ABA.

Maybe the biggest endorsement I can give ABA is this: before ABA, I had no toolkit, and I ran out of patience all the time. Now, I have a toolkit, and I only run out of patience 60 percent of the time! And technically I'm not really eligible for services, so don't let on to the (bankrupt) state of California...

In no way do I have any expertise about therapies, beyond being a mom and a teacher, nor do I know what is right for anyone else's child who has autism. From what I read, there are all kinds of effective ways to help kids, and I certainly understand why ABA isn't right for everyone. I just wanted to take a moment and appreciate all the resources out there who helped point our family toward ABA, because we see the benefits. We still have a long way to go, but already I'm grateful to D, our ABA director, and JT, our ABA provider, beyond my ability to adequately express it.

Lest We Forget

Peaches can say "because" now, has been able to say if for months, and still we we miss "cubuz."

Today Peaches asked me who made babies. Rooster asked Peaches if she has "boobies." I can't hook Rooster's size 6 shorts on him anymore, and he's only five - I'm struggling to wrap my head around going to the store to buy him the next size. He finally mastered using the mouse today, motivated by wanting to visit the iCarly web site. He told me that Amy, from camp, "broke up" with him. Peaches wants more "lipstick" (Chapstick) and some clip on earrings, and she has a preference for a particular hair stylist, who puts on sparkles and HAIRSPRAY after the bangs are trimmed. My three year old walks around the house wearing what she calls her wedding veil. In some ways, they grow up too fast.

In that spirit, I will admit that I am glad:

Peaches still uses this construction: "Why you have on glasses, mama?"
Rooster hasn't perfected "th." He wants me to play "wiff" him.
They both sing hysterically misunderstood lyrics to songs. Two different versions for each song, both wrong, both loud and unapologetic.
Peaches wants to hold my hand going down the stairs.
Rooster runs up to hug and kiss me when I pick him up from camp.

I am also glad that they are growing up, too. I am excited that:
Rooster always does his own seat belt now.
He introduces me to people I don't know.
He's less and less interested in Sesame Street (-- though I will always treasure Sesame Street).
Peaches can do the 24 piece puzzle I bought for Rooster, and enjoys doing it over and over and over.
When I told Roo I was proud of him the other day, so proud, he showed off his new spelling skills and asked, "Could you b-u-s-t bust?!"
We threw out all the old, broken sippy cups today. Except in the car, the kids are drinking "big kid style" now.

I absolutely own that I'm a curmudgeonly sort. But I make it plain, too, that under my Oscar the Grouch costume, I'm all Elmo Loves You. I never forget to treasure my kids, no matter how it might seem. I might talk about being cursed by the deities (they mess with me, I swear they do!), but I also know I am, come what may, a lucky, lucky mama.

This is a complicated life, this. Everyone's. Tragedies and challenges and the mundane and joy and loveliness, all interwoven.

What makes you glad?

Wait Wait, Don't Tell Me...

Waiting rooms make great metaphors, don't they? And they are.
In a way the special needs blogosphere I inhabit feels a lot like a waiting room. We're all here while our kids are close by, doing what they need to do, and while we wait, we compare notes.

In the last five years, I have spent more time in waiting rooms than I care to calculate. I've been pretty much every kind of waiting room parent there is: I've been the coach on the sidelines, watching my child's every move through the viewing window; I've been the obnoxious cell phone talker, though only when other pressing matters such as sick family members necessitated it; I've sat silently brooding; I've read outdated and germy looking copies of Oprah's magazine, though I can't recall a single article; I've invited conversation; I've lurked; I've wept. I'm not always good "in a room." When I am, when the waiting room works best for me, I connect.

Just like via blogs, I like when a waiting room dialogue reveals a productive idea, yields a valuable insight, or unearths common ground. I like making friends. I like helping others. I like figuring out my rooster boy.

On my last post, I had a comment from a new reader. I met Diego's mom at OT, in the waiting room. I have seen here there for almost a year of Monday mornings, her sweet boy working and playing alongside the rooster on trapeze and swings, and I had no idea she was an artist, or that our husbands would have things in common, or that she, too, blogs. This week, at the rooster's second to last OT, we talked, swapped urls. Her blog is so beautiful! It makes me feel so WORDY and ugly! She's an amazing mom, about to put her career aside for at least a year to help her son attend an impressive and intense school that demands a substantial parental commitment. If you get a chance, drop in on her over at http://www.elsita.typepad.com/. Tell her Rooster's mom sent ya.

??

A slow learner, yes I am. So slow I wonder if I'm teachable at all. You've heard this all before, friends.

Today, at school, where I work, I am asked, fatefully, "How's it going for Rooster at camp?"
Makes you want to smack me, doesn't it, knowing how I stacked the deck against us all? Ah, so.
"You know," I said, "not since he was an infant have I ever been able to pick him up day after day and everything is just fine. The teachers always say, 'He had a good day.' He has friends and he's having fun. I'm enjoying the reprieve."

Cut to:
I walk into camp, and the shadow is ready for me, and I know that look even though it's the first time I've seen it from her. "Today he had a tough day. Lots of tantrums. LOTS of them, just finished throwing a fit when he saw you pull up. Fighting with Amy. And he kicked me. Twice."

As goes Rooster's day, so goes it for us all, I guess. I had a tough one myself.

And I'm facing a quandary.

I have lost my mind completely and somehow agreed to attend my twentieth high school reunion in September, because two of my dearest friends will be there, one with her new baby I haven't kissed and squeezed yet, AND the reunion falls near my mom's big milestone birthday, and what she really wants is to see me. What she wants even more is to see a grandchild. Well, she WANTS to see kids, but if she's lucky she will get to settle for one.

I can manage to fly with one child, and, at that, I'd rather fly with snakes on a plane. I cannot (worth repeating CANNOT) fly alone cross country with both my snakes, er, children. It is not even fathomable without J, barely fathomable with him.

But which one should I take?

Last time I went East about a year ago I took Peaches. And she? Was. Awful. She went 36 hours without sleeping more than a catnap, never slept through any of the three nights we spent, startling every time she lost skin contact with me. I felt as if she would be my undoing, and with everything else going on, I was nearly undone for sure. When the second leg of our eternal trip back to Cali was delayed for hours, I sunk into the airport carpet and left a tiny piece of my sanity among the stains... I think I made a promise to the universe then that I'd never fly with Peaches alone again until she had a driver's license to show at security checkpoints.

So it should be Rooster's turn to go. He hasn't been in two whole years.

But Peaches will WANT to go, and Rooster will not. And Peaches will flip her little lid if I go without her. And Rooster will not. And Peaches will enjoy the reunion. And Rooster will not. And she will be able to occupy herself for a few minutes safely now and then in her Grandma and Grandpa's house, and Rooster will not.

I asked my mother, "Which one?" And she said, "Oh no, don't ask me to choose between my grandchildren, don't ever ask me to do that." I know, of course, that it isn't like that. I know my mom makes faulty oversimplifications when she says that. I know, as I've said before, fair isn't giving each child the same thing, but giving each what he or she needs.

Honestly, I want to bring Rooster. I want him to do better than I think he will. I want him to charm everyone with those gorgeous long lashes and delicious smile. I want people to tell me, "You exaggerate, he's doing so much better than how you make it seem." I want photos of him with family and friends. I want him to distract me from the people in my home town who are missing, who I am missing. I want him to enlighten people and make them care about autism. I want to be too busy caring for him to think about the last time I was home. I want to give him his turn, and to get a wee break from talk of fairy princesses and purple.

It's not that I don't want to bring Peaches. I adore her, you know I do. I just cannot bring them both, and it's his turn.

But then reality sets in. Rooster can't simply take turns like he's a typical child. Rooster travels with a pharmacy, and his daddy is the pharmacist, not me. The rural South has grits, gravy, hash browns, and disdain for special needs diets. I'd need to bring my own gfcf refrigerator. And neither the Rooster nor his mother need the pressure of those wishes I just described: WANTING him to do better than I expect pretty much dooms us, as I proved at the top of this post. I know in all likelihood that the Rooster would spend much of the trip begging to go home, missing his daddy and his toys, and that I would likely encounter painfully sympathetic looks from well meaning classmates and painfully unsympathetic looks from NOT well meaning classmates, and that I don't need any more reasons for holding grudges that date back to my angsty teen years.

Even with all his curly-topped charm, my rooster IS a tough little boy. He is difficult and challenging and roostery. But the truth is, as much as I whine and moan, I have a very hard time imagining spending a weekend far away from him.

I mean, did I tell you that he has a crush on a girl, and that he started wearing a watch, and that today he sounded out the word "mom"? He's getting so much better at... UH, UM, he's getting much better at driving me NUTS is what he's getting better at, so there. And tomorrow he's going on a field trip and it's going to be a TOUGH DAY. You hear that deities? A TOUGH DAY.

"...I Could Bust..."

My son didn't JUST lose his first tooth today.

He lost his first TWO teeth today. And he didn't just "lose" them. He had to have them extracted, because our little shark boy already had the big teeth growing in behind the baby bottom incisors.

AND I dreaded the dentist appointment, so J said he'd do it. At nine, I stared at my phone. I chewed my bottom lip. I knew it was tooth time. At 9:20, I was in shock when I got the call: All done! No problem! Piece of cake! Wham, bam. (My brave boy! My amazing dentist!)

We just put him to bed with his teeth in the special box under his pillow, and we got on video his eager expectation of "coins!" Peaches, of course, has many questions about this fairy business, vacillating between joy that fairies will be in her house and fear that they will come in her room.

My boy. Five years old. Missing two teeth. Wrote his name for the first time. Sounding out a few short words ("snow" and "bust"). Dancing with the girls at camp; "Mommy, I am going to introduce you. This is Amy and Amir! And this is Amir and this is AMY!"

My boy. Crying when he sees his old school, melting down today picking up his sister, sobbing when he asked, "Where is MY cubby? This is not my stuff in my cubby! I miss my school!"

My boy. Language regression, less than zero attention span for ABA. Scripting, perseverating. Put on time out, stamping away, declaring, "I leave with my DIGNITY!" Telling me he speaks Chinese, German, Spanish.

My boy. Wow. This all seems very sudden. How did all these ENDLESS, ETERNAL days that CREPT by at a torturous crawl add up to feeling like anything happened suddenly?

And yet. My boy. He's big. So big.

So proud of you, Rooster.

I'm A Lurker

In the blogosphere, I am first and foremost a lurker.

While I've been blogging for more than a year, and I think of myself as somewhat prolific, I spend an even more substantial chunk of time reading. Lurking, because I often read on my phone, and it's hard to type comments on my phone (especially while I'm driving a car). I DO comment, I just usually comment in my head, with my heart. And I break promises to myself all the time to later dash those comments off when I'm on a real keyboard later.

Being a lurker means that I feel a close sense of friendship or kinship with people who don't know my name, have little or no idea I exist. Being a lurker means I get to follow the lives of those who fascinate me, from whom I can learn, without leaving a trace. Being a lurker has helped me educate myself about autism.

My RSS aggregator, chock full of myriad voices, reveals my two great interests: education (particularly as it relates to educational technology) and special needs parenting (particularly related to autism). In the first realm, I feel professional, confident, empowered, excited, eager. In the second, I feel emotional, neurotic, needy, exhausted, cautious. Sometimes the two realms overlap. Then I feel awkward. Want to know how I feel about educational technology's potential for helping children with autism? So would I. I can't seem to wear both hats at once; I fall silent.

As a writer in the blogosphere, I found my voice through talking about autism, or more specifically at least talking about my family's experience with a child affected by autism. Although I've written ever since I could talk, I always preferred writing about other people -- I wrote news and feature stories, arts reviews, short stories and poems. I wrote in the third person most of the time.

Then, my son came along. From the day I met him, I adored him, and I suspected he struggled with challenges I couldn't quite articulate. It took years into my desperate struggle to understand my son better for me to find the resources I needed, wanted, craved, sought. I had looked to doctors, teachers, therapists, family members, lactation consultants, mothers' groups ... at last I turned to Google, and finally I found the special needs blogosphere. I read and read and read, and suddenly I had to blog. I had to say, ME TOO. I had to say, HI, PEOPLE IN SIMILAR SITUATIONS. THANK YOU FOR REACHING OUT! I THOUGHT I WAS ALL ALONE, AND I'VE BEEN SO CONFUSED! I read blogs, and then I needed to write one. I didn't write to be read, I didn't write for the sake of those whose blogs I followed, I blogged because reading blogs inspired me to seek the relief that writing gives.

When I blog, it is a purely selfish act. That is a good thing. I do not speak of selfish in a pejorative tone. When I blog, I help myself. When I blog, I lose mental weight. When I blog, I heal a bit. When I don't blog, I suffer. When I blog, I am real, I am honest, I open up a vein. I do not blog for comments. I do not blog for anyone else. I deeply appreciate comments, I enjoy them, I welcome them, and I treasure the friendships and connections that result. But hecklers can't really hurt me, because I don't need an audience, and I don't much care if my stories of my experience with autism don't jive for someone else. It's a great wide blogosphere out there, and anyone who isn't looking to relate or be positive can keep stepping. Or they can just read me and lurk. If you can't say something nice... lurk.

We all speak only from our own experience. In my experience, if you need to know about autism, you need the blogosphere. If you need support for dealing with autism, it's the best place to go. If you need experienced voices to describe the pros and cons of therapies or treatments, it's the place to go. If you need a good cry, it's the place to go. If you need resources for your family, it's the place. If you need to know the ins and outs of IEPs, it's the place. If you need to know how to get a screaming child out of the mall without getting arrested, or the best come-back line for insensitive relatives, or a gfcf recipe, or examples of how well special needs kids can blossom over time, or proof that you are not doing it all wrong, or a good laugh... well, you need the blogosphere.

If you need the blogosphere, start by lurking. Read people who resonate for you, and then read who they read, and read people who read them. Lurk. And then, when you're ready, send me the url for your blog, so I can keep lurking in all the best neighborhoods in the blogosphere.